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ALZlive Introduces Young Voices for Dementia

A candid look at the world of young women whose mothers have early-onset dementia. It’s not always a pretty picture, but the warm group support helps immeasurably.

In 2011, I threw a digital alarm clock at my 59-year-old mother because she couldn’t figure out how to set the time.

In January 2012, my mother managed to overdraft her bank account every two weeks for six months.

In May 2012, after five grueling hours of neuropsychological testing, an expert in dementia and Alzheimer’s said, although my mother was testing well below low average on her exams, there was no way she would have brain failure. Not at her age. Not without a sound family history.

In March 2013, my mother called me from her home where she had operated a private daycare facility for the past 37 years. “I don’t know how to make the baby bottles,” she said, crying. “I don’t remember what to do.”

We shuttered the daycare immediately.

She’s having a nervous breakdown, I bargained.

She’s always been depressed, I lied.

She never dealt with dad’s cheating and their divorce a decade ago, I denied.

In fall 2013, we drove seven hours to Mayo Clinic in Rochester, Minn., for what her primary care physician described as “a battery of all tests known to man,” including this very telling clock drawing:

It took a week of long waits, scans, mental tests, a spinal tap and hours waiting in a windowless hotel room while watching cartoons to pass the time between appointments. Finally, the consultation.

It wasn’t depression. It wasn’t pseudodementia or a thyroid condition or low B vitamins or a stroke. It was dementia, a kind the doctor referred to as “most statistically like that of an Alzheimer process.”

At a loss for what to do and where to go next, I combed the Internet looking for people like me – young women in the primes of their lives; those in their 20s and 30s with parents enduring the same, devastating, terrifying fate.

At first, I found a few of them. One lived in New York. Another in West Virginia. Yet another in Swansea, Wales, UK.

Lonna Whiting, 35, of North Dakota, founded Young Voices for Dementia. She cares for her mom, diagnosed at 61.

Over a span of two months, our group formed a private Facebook page available by invite or request only. Quickly we went from five women to more than 100. We know there are so many more out there.

Since then, together we’ve laughed, cried, grieved for the living and grieved for the lost. We don’t know where we’d be without each other, and we have a lot in common.

We are scared for our loved ones’ futures, and we’re scared about ourselves and passing this demented legacy onto our children. We are scared our stories will go untold because of society’s fear of Alzheimer’s and the stigma of becoming a caregiver and becoming someone who needs care.

We’ve decided together that we won’t sit idly by and accept this disease as something that just happens. Dementia is a brain failure that happens and must be shared with the world so that others may not have to endure the Longest Goodbye.